It hasn’t been a great week. There has been a confluence of events lately that has left me in tears, especially today. Today, I learned that one of my cyber-sistahs died yesterday of breast cancer, after being treated for several months for mets to the brain. Another friend, who had breast cancer a few years ago, has been back and forth to the hospital to have a large, but at least non-cancerous, tumor removed from her abdomen, along with the ovary it was wrapped around. Another friend recently diagnosed with breast cancer has a mastectomy scheduled for tomorrow. Yet another friend who is BRCA1 positive, whose mom died of breast cancer, has a prophylactic bilateral mastectomy scheduled within the next two weeks.

Then a few more items got loaded onto the platter. Another dear friend, who has thus far survived breast cancer, has been trying to survive a divorce and its financial aftermath. One of her challenges has been losing her health insurance. She’s found a new lump in one of her breasts and she needs to have it checked out. But she can’t afford a mammogram or even an office visit to get referred for a mammogram. You know all those programs you read about that provide “free” mammograms? Just try finding one when you really need one — and you needed it yesterday.

One of the ironies of this is that I’ve been doing research for a post about all these free mammogram programs, particularly those that are supposed to be funded by the CDC’s National Breast and Cervical Cancer Early Detection Program. More to come in that future post. Suffice it to say, however, that my friend has discovered just how difficult it is to find one of these programs to help her out. After jumping through various hoops, she is finally going to be interviewed by a local program next week. Great. “Interviewed.” What exactly does she need to be interviewed about? “I’m broke, I’ve had breast cancer, and I’ve found a new lump,” really ought to be all they need to know, don’t you think? I wonder if she’ll have to have a separate interview before she gets biopsied. Wonder if the “free” services even include things like biopsies. That’s one of the questions I hope to answer in my future post. Yeah, swell, get yourself a free mammogram. But what happens if it finds something? Do you get a free biopsy? A breast MRI? A free surgical consult? Free surgery and follow-up treatment? Who knows? Even with healthcare reform, there are no simple, straight-forward answers to these questions. And yet certain members of Congress are still hell-bent on gutting healthcare reform entirely. Oh, yeah, that’ll fix everything. Wait’ll one of you gets diagnosed with breast cancer. Or someone you know does. Who has no insurance. But, hey, knock yourselves out, huh?

If all of this wasn’t just too much already, my friend Gina Maisano, founder of No Surrender Breast Cancer Foundation, posted yesterday about her failure to obtain a five-thousand dollar grant to help fund her Before Forty Initiative, a program that helps women who are at risk for being diagnosed with the types of breast cancers that strike younger women, like Triple Negative Breast Cancer, which hits African American and Hispanic women disproportionately. These are the kinds of breast cancers that are more aggressive, more likely to become metastatic, more likely to kill you if not found early. Before you’re fifty. Before you’re forty. Before the USPSTF guidelines recommend screening mammograms. Before insurance companies want to pay for screening mammograms, despite what risk group you’re in. Nancy Brinker’s sister, Susan Komen, was diagnosed with breast cancer at age 33. And lost her life to breast cancer at age 36.

I wonder how much perfume Susan G. Komen for the Cure sold last week on the Home Shopping Network. Somehow, I’ll bet they made more than $5,000. But guess who wouldn’t give Gina $5,000 to help her initiative? You guessed it: good ol’ SGK, via their Greater New York affiliate. And you want to know why? According to Gina’s post on the subject, Big Pink Says No, their reply stated that, ‘Your project, “Before Forty Initiative” is not eligible for funding because Susan G. Komen for the Cure’s current screening guidelines are not in line with what your organization promotes.’ Really? So, what exactly are SGK’s current screening guidelines?

I did a little digging. And it turns out SGK is offering a webinar about African American women and Triple Negative Breast Cancer. Oh, wait. That already happened on Valentine’s Day. Darn. Okay, well, they do offer this informational page on Triple Negative Breast Cancer. And they did provide a $6.4 million research grant for research on Triple Negative Breast Cancer by “teaming up” with the Triple Negative Breast Cancer Foundation. And they have this other page about screening guidelines for high-risk women, which “outlines” the guidelines published by the American Cancer Society and the National Comprehensive Cancer Network (NCCN) recommendations for women at higher risk. Funny though. It doesn’t say anything specific about African American and Hispanic women or Triple Negative Breast Cancer. Huh.

I took some time to review all these guidelines, and the bottom line is that there is no one right answer to when a woman should get screened for breast cancer. The American Cancer Society’s page on risk factors you cannot change, such as race, genes, or family history, illustrates how confusing this decision can be, as well as how ultimately, guidelines can only guide, but are not meant to be applied to every individual circumstance. This wouldn’t even be the issue it is in the country were it not for our crazy, broken, wildly uneven and appallingly inequitable U.S. healthcare system. It is, unfortunately, a fact of life in this country that some of the women who are at a higher risk for developing an aggressive form of breast cancer when they’re younger than 40, are often the same ones who are poor or under-employed or have no insurance or do not qualify for the few stop-gap programs there are, like Medicaid. These are the women that are supposed to be able to get free mammograms from all these assorted programs, funded by assorted charitable organizations, including SGK. These are the women that Gina is trying to help with her initiative. There are a lot of web pages on SGK’s site about women at higher than normal risk, about economic and cancer incidence disparity, racial and ethnic disparity, and the programs they fund through their affiliates to address these issues. So it truly puzzles me that they would deny a grant to Gina because they claim her program promotes screening guidelines which don’t line up with theirs. And if that is the real reason, it’s a specious one.

As luck would have it, while I was working on this post, I heard an interview with Dr. David Ansell, who just wrote about book about his experiences at Chicago’s Cook County Hospital, the kind of hospital where the people who fall through the gaps in our healthcare system often end up. In 2002, a new hospital was built to replace Cook County Hospital, but as Dr. Ansell points out, a new facility just “cannot compensate for social inequalities and limited access to preventive health care” in a system that is based primarily on private and employer-based insurance. Charitable organizations try to address some of these inequities, but that is far from a perfect solution.

Meanwhile, SGK touts itself as a leader in providing breast cancer screening to some of the people for whom our system fails to provide access. A report on their website, from November of 2009, a month after the USPSTF guidelines were published, is headlined Susan G. Komen for the Cure® Recommends No Impediments to Breast Cancer Screening. First, the report states its commitment to continuing the previous standard of providing screening mammograms to all women aged forty and over. It then goes on to say:

Our real focus, however, should be on the fact that one-third of the women who qualify for screening under today’s guidelines are not being screened due to lack of access, education or awareness. That issue needs focus and attention: if we can make progress with screening in vulnerable populations, we could make more progress in the fight against breast cancer.

For African-American women this is particularly urgent, because too few African-American women are getting annual mammograms and breast screenings under the rules that exist today. Additionally, with the African American population facing diagnosis at younger ages, getting screened early is critical.

But they won’t fund Gina’s program? Why? Furthermore, SGK lists a page of such programs they have funded in the past, dubbed, Vulnerable Community Grants. These include several programs aimed at African American, Latina and Hispanic women. However, at the bottom of the page, they warn that at “this time, Komen is not accepting unsolicited proposals. Komen is focusing funding efforts on current commitments and will be accepting proposals by invitation only.” So maybe that’s Gina’s problem: she didn’t wait for an invitation.

Meanwhile, I tried to search for the program in Florida that is interviewing my newly-divorced friend next week for a free mammogram. And I found this, posted by the Breast Health Coalition of Martin & St. Lucie Counties, Florida: Susan G. Komen for the Cure Mammography/Ultrasound/Biopsy Grant, a program “to provide free mammograms, ultrasounds and biopsies to the medically underserved.” The eligibility requirements make no mention whatsoever of age. You do need to obtain a referral, but the Coalition will help you with that as well. Nowhere does it say that you have to be over forty to qualify, in order to comply with SGK’s “current screening guidelines.” Nor does it say that on the Susan G. Komen Mammography Financial Assistance Form provided on the site.

Meanwhile, Gina, the woman on the right here, has to go back to the drawing board. After getting screening mammograms since the age of 35, Gina herself was diagnosed with Triple Negative Breast Cancer in 2001 at age 39, when a shadow found on her fourth annual mammogram turned out to be her tumor. It was caught early, and she continues to live and be healthy. Her best friend Ferne, on the left, was not so fortunate. She did not get her first mammogram until she was 41, when she found a lump. She was also diagnosed with TNBC, but it was not early, and it killed her. She had no family history. Before Ferne died, Gina made a promise to her that she would continue to work on helping younger women get screened earlier, before it was too late to give them a better chance to survive. Nancy Brinker made a similar promise to her young sister. Too bad SGK failed to decide that helping Gina keep her promise might be an appropriate way to help Nancy Brinker keep her own.

If you’d like to help Gina help women, please consider sending No Surrender a donation. Let’s help her raise five-thousand-and-one dollars instead, without Big Pink’s pink money.

Please click on the post title or the comment link below to post a response.

The grant I applied for did not require an invitation. It was an open ended grant program.

Perhaps if they actually saw their friends dying they would understand… perhaps if the logo for Before Forty was wrapped in a pink bow and had happy faces pasted on it… perhaps if it wasn’t just so damn close to the real story of breast cancer….

I spoke to a researcher familiar with the study they funded with the TNBC Fndtn. According to him, that money should have been used for a more promising study because it had no hope of amounting to anything that would remotely help women with TNBC. As a result, the money is gone, the study useless and women are still dying. And they are dying young from TNBC. But that “does not fit their guidelines…..”

I would also like to add that they are denying under-insured and low income women assistance in follow up care for existing TNBC once treatment is completed because they do not have to take continuing meds like ER/PR+ women do. Two No Surrender women have asked for assistance to see their oncologists, less than a year out of finishing their tx for TNBC, and were denied help from the Pink.

If your friend who cannot afford diagnostic screening is in the Chicago area, there’s a great organization that funds mammograms and, if necessary, other diagnostic screening. The organization has partnered with six or seven Chicago-area hospitals.

The organization is called A Silver Lining Foundation and can be reached at asilverliningfoundation.org. If your friend is not from Chicago, maybe she can consider coming to this city for such services?

A Silver Lining Foundation really cares and is the real deal. Its founder is a breast cancer survivor.

With politicians, the thing is that they’ll never have first hand experience with cancer and no insurance because of the huge and growing divide between the haves and have nots. Way too many people believe we get what we deserve.

Thanks Kate for your blog post and supporting this important endeavor. I was diagnosed at 38; by a breast self-exam. No family history. etc. and too young for a mammogram. Then it came back in 2008 as stage IV. My platform is to give hope and inspiration to people and show how they can take care of themselves. I’m also about sharing valuable resources like the one you mentioned.

Unfortunately mammograms aren’t too effective on young dense breast tissue. There is a new 3-D mammography called tomosynthesis that addresses that. I blogged about it last week on my site http://www.miraclesurvivors.com. Pretty exciting stuff.

Thanks, Tami. And welcome! One of the things Gina is trying to do is get imaging beside mamm’s to be provided for younger women. I saw a write-up about 3D mamm’s, but not your post. I’ll have to read it now. I always think, if they can put a man (or a woman!) on the moon, they can find a better way to screen breast tissue. It’s good to see some new things being worked on.

This is very strange, and it seems to run counter to Komen’s plan. I don’t agree with Komen’s plan, but still… they should at least be consistent.

I see great evidence for the shift in general screening for women over age fifty every two years as recommended by the US Preventative task force. However, even they (and other bodies as well) concede that high risk populations should have access to some kind of screening at younger ages. It’s not a one size fits all recommendation even though it is often described as one.

How is it determined that the women in the under forty initiative are at high risk for Triple Negative? That would seem to be the place to make the argument.

3-D mammography does sound promising for women under 40 with dense breasts. But I’m guessing that women who can’t afford insurance or are underinsured would have a hard time making a case for tomosynthesis even with a family history because of the cost of new technology. But I’m still glad that progress is being made. Kathi, continue to speak out; we are listening and spreading the word.
Jan XXX

This decision is surprising, especially since Triple Negative breast cancer is Komen’s cause du jour right now. And wasn’t Suzy K a young woman under 40 who had Triple Negative ? Perhaps a better response from Komen would have been to ask further questions, and give this foundation a better idea of how they might obtain funding if not now, but in the future. I mean what is Komen’s strategy for helping Triple Negative, high-risk women under 40 anyway?

Thank you for the intensity – the passion and care you lavish on your friends. They are fortunate to have the force that is “you” on their side.

There’s much about finding free care, the Komen funding model, and obtaining funding as a newly established NPO that I can’t fully address here. Applying for grants and understanding how that works takes a life all of its own. I encourage Gina to keep trying; go so far as to meet with the Komen funding reps (if she hasn’t already) Those face to face meetings go a long way.

But the most important thing is to thank you for taking such good care of your friends. You are a lioness:)

Amazing post! Way to dig through the facts and expose the truth. I sadly, see this all the time which is why I created my site. I wanted to provide women with a site put on by a person, not a corporation. I wanted easy to read info that was actually truthful. I am in the process of developing a foundation to help women with everyday expenses during treatment. I think that really stinks for your friend and if you have any resources in florida, please let me know as that’s where I live. I am always trying to help my patients out. You should never have to qualify for something meant to save your life 🙁 I felt like I got punched in the gut when I read this post, so thanks for taking the time to do all this work and investigation.
Something else to consider is how many radiology centers are making beaucoup bucks adding “breast services” and pink ribbons to their advertising. Sadly, many of the rads are not experienced in breast imaging and women suffer by having unnecessary biopsies or not getting their breast cancer diagnosed in a timely manner.
Check out my site at http://www.mybreastcanceranswers.com
Your Fellow Advocate!
Heather Flanagan, ARNP
Founder, My Breast Cancer Answers

Have you heard of BSGI or dedicated breast ultrasound or PEM? These are new techniques to hopefully diagnose breast ca earlier. BSGI and PEM have a lot of radiation though, so probably best for looking for occult (hidden) cancers when a women is already diagnosed with cancer. Dedicated breast u/s could be promising.
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I'm a symmetry-challenged Baby-Boomer, an artist, writer & closet geek with a day job as a healthcare clinician. In 2008, I was diagnosed with breast cancer. Thus far, I've lived to complain about it -- and there's a lot to complain about, in the healthcare system & in the rampant merchandising of this disease. Change does not happen in silence, so I choose to speak out & question the status quo, with gusto, soul-searching, analysis & research, in the hope that it might help. A little skepticism is healthier than a lot of disillusionment.

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